Prognosis and End of Life Care. Fatima Sheikh, M.D., M.P.H., C.M.D. Medical Director FutureCare Health and Management Corporation

Transcription

1 Prognosis and End of Life Care Fatima Sheikh, M.D., M.P.H., C.M.D. Medical Director FutureCare Health and Management Corporation

2 1. Defining End of life Objectives 2. Historical background 3. Ethical issues 4. Prognostication 5. Advance care Planning 6. Delivery of palliative care 7. Hospice Consultation Program

3 Defining End of life Objectives

4 End-of-Life Last days to weeks or months to years of life for patients with a disease or symptom complex who will eventually die from the condition End-of-life care is the term used to describe the support and medical care given during the time surrounding death. (National Institute on Aging) Death is the end of life. Dying is the process of approaching death, including the choices and actions involved in that process.

5 End-of-Life Terminal Condition: An incurable condition that makes death imminent. End Stage Condition: An advanced, progressive, irreversible condition caused by injury, disease, or illness: (1) that has caused severe and permanent deterioration indicated by incompetency and complete physical dependency; and (2) for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective. Persistent Vegetative State: An irreversible loss of consciousness, despite reflexive nerve and muscle activity. Summary of Health Care Decisions Act

6 End-of-Life WHY IMPORTANT FOR US? More than 25% of people dying in the United States die in nursing homes JAMA Teno JM.Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009.

7 End-of-Life WHY IMPORTANT FOR US? In Patients above 65 years of age One in 4 died in acute care hospital 28% died in nursing homes One third died at home 30% of decedents were admitted to ICU in the month prior to their death 44%-69% of NH residents unable to make their own decisions Dying in America: Improving Quality and Honoring Individual Preferences Near End-of- Life. Institute of Medicine of the National Academics

8 End-of-Life End-of-life care consists of two practices a. Withholding and withdrawal of life support b. Palliative care Withholding and withdrawal of life support Patients are expected to die from their underlying disease. Palliative care Prevention or treatment of symptoms in terminally ill patients (pain, shortness of breath etc.) Critical Care Medicine Luce, JM. End-of-life care: What do the American courts say?

9 1. Defining End of life Objectives 2. Historical background

10 Historical Background End-of-life Legislations in United States Natural Death Act (1976) an adult person has the fundamental right to control the decisions relating to the rendering of his or her own medical care, including the decision to have life-sustaining treatment withheld or withdrawn in instances of a terminal condition or permanent unconscious condition.

11 Historical Background Patient Self Determination Act (PSDA)1990 Enacted in 1991 Protects the right of individuals to make health care decisions for themselves and establishes the legal right for advanced directives Death with Dignity Act (1994) Passed in Oregon Enacted in 1997 Allow mentally competent, terminally-ill adult state residents to voluntarily request and receive a prescription medication to hasten their death

12 1997: Historical Background Congress passed legislation against physician-assisted suicide The US Supreme Court ruled that mentally competent terminally ill people do not have a constitutional right to physician-assisted suicide Oregon passes Death with Dignity Act for the second time

13 Historical Background 1974: First hospice facility in U.S. The Connecticut Hospice *: The Medicare Hospice Benefit was made permanent by Congress. For Medicaid it was optional for the states. Inclusion of long-term care institutions in the Medicare Hospice benefit 1993: President Clinton s health care reform proposal. Hospice was made nationally guaranteed benefit *Oncol Nurs Forum Palliative and End-of-Life Care: Policy Analysis. Reb. AM

14 1. Defining End of life 2. Historical background 3. Ethical issues Objectives

15 Ethical issues Physicians are not obligated to provide care they consider physiologically futile If treatment cannot achieve its intended purpose, then to withhold it does not cause harm Failure to provide such treatment is not a failure to meet the professional standard of care

16 Differentiation of assisted suicide from palliative care- Ethical issues Myth- Double effect of sedatives and analgesics in end-of-life Sedatives can relieve pain (morally good, beneficial effect) but they can hasten death (morally bad, adverse effect) Provided only the good effect is intended even though the adverse affect was foreseen Barrier in pain management at end-of-life

17 1. Defining End of life 2. Historical background 3. Ethical issues 4. Prognostication Objectives

18 Profiles of Older Medicare Decedents Journal of the American Geriatrics Society Volume 50, Issue 6, pages , 18 JUL 2002 DOI: /j x

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21 Prognostication DEMENTIA The patient has both 1 and 2: 1. Stage 7C or beyond according to the FAST Scale AND One or more of the following conditions in the 12 months: 1. Aspiration pneumonia 2. Pyelonephritis 3. Septicemia 4. Multiple pressure ulcers ( stage 3-4) 5. Recurrent Fever 6. Other significant condition that suggests a limited prognosis 7. Inability to maintain sufficient fluid and calorie intake in the past 6months ( 10% weight loss or albumin < 2.5 gm/dl) Ross_and_Sanchez_Reilly _2008.pdfHospice

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23 TERMINAL ILLNESS Prognostication 1. Terminal condition cannot be attributed to a single specific illness. And Rapid decline over past 3-6months Evidenced by: 1. Progression of disease evidenced by sx, signs & test results 2. Decline in PPS to 50% 3. Involuntary weight loss >10% and/or Albumin <2.5 ADULT FAILURE TO THRIVE Patient meets ALL of the following: 1. Palliative performance Scale 40% 2. BMI <22 3. Pt refusing enteral or parenteral nutrition support or has not responded to such nutritional support, despite adequate caloric intake Ross_and_Sanchez_Reilly _2008.pdfHospice

24 CANCER Prognostication Patient meets ALL of the following: 1. Clinical findings of malignancy with widespread, aggressive or progressive disease as evidenced by increasing sx, worsening lab values and/or evidence of metastatic disease 2. Palliative performance Scale (PPS) 70% 3. Refuses further life-prolonging therapy OR continues to decline in spite of definitive therapy Ross_and_Sanchez_Reilly_200 8.pdfHospice

25 Prognostication PULMONARY DISEASE Severe chronic lung disease as documented by 1, 2, and The patient has all of the following: Disabling dyspnea at rest Little of no response to bronchodilators Decreased functional capacity (e.g. bed to chair existence, fatigue and cough) AND 2. Progression of disease as evidenced by a recent h/o increasing office, home, or ED visits and/or hospitalizations for pulmonary infection and/or respiratory failure AND 3. Documentation within the past 3 months 1: Hypoxemia at rest on room air (p02 < 55 mmhg by ABG) or oxygen saturation < 88% Hypercapnia evidenced by pc02 > 50 mmhg Supporting documentation includes: Cor pulmonal and right heart failure Unintentional progressive weight loss Ross_and_Sanchez_Reilly_2008.pdfHospice

26 Prognostication HEART DISEASE The patient has 1 and either 2 or CHF with NYHA Class IV* sx and both : Significant sx at rest Inability to carry out even minimal physical activity without dyspnea or angina 2. Patient is optimally treated (ie diuretics, vasodilators, ACEI, or hydralazine and nitrates) 3. The patient has angina pectoris at rest, resistant to standard nitrate therapy, and is either not a candidate for/or has declined invasive procedures Supporting documentation includes: EF 20%, Treatment resistant symptomatic dysrythmias h/o cardiac related syncope, CVA 2/2 cardiac embolism H/o cardiac resuscitation, concomitant HIV disease Ross_and_Sanchez_Reilly_2008.pdfHospice

27 Prognostication QXMD calculate (6 month Mortality on HD) BODE Index (COPD) Palliative Performance Scale Palliative Prognostic Index MCC Gems Multiple chronic conditions Seattle Heart Failure calculator Gofarcalc.com (Good Outcome Following Attempted Resuscitation) ADEPT (Advanced Dementia Prognostic Tool)

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31 Objectives 1. Defining End of life 2. Historical background 3. Ethical issues 4. Prognostication 5. Advance care Planning

32 Advance Care Planning Patient-centered advance care planning (ACP) is a communication process between a patient and his/her care providers, which may involve family or friends, about the goals and desired direction of care at the end of life in an event when the patient loses the capacity to make decisions J Pain Symptom Manag Vandervoot A. Advance care planning and physician orders in nursing home residents with dementia: a nationwide retrospective study among professional caregivers and relatives

33 Advance care planning Advance Directives Ad A MOLST

34 Why Initiate Advance Care Planning Communication about end-of-life care is associated with- 1. Reduced life sustaining treatments 2. Reduced health care costs at end-of-life 3. Reduced psychological stress among family 4. Decreased patient anxiety 5. Improved patient satisfaction with provider 6. More use of hospice services 7. Improved quality of life 1.Nurs Outlook Aziz NM. Palliative and end-of-life care research: embracing new opportunities 2. JACC Heart Fail Stevenson LW. Advanced care planning: care to plan in advance

35 When to Initiate Advance Care Planning Indications for discussing end-of-life Urgent Indications Imminent death Talk about wanting to die Inquiries about hospice or palliative care Recently hospitalized for severe progressive illness Severe suffering and poor prognosis Routine Indications Discussing prognosis Discussing treatment with low probability of success Discussing hopes and fears Physician would not be surprised if the patient died in 6-12 months JAMA Quill TE. Initiating End-of-Life Discussions With Seriously Ill Patients Addressing the Elephant in the Room

36 When to Initiate Advance Care Planning Timing and support for discussions Start discussions when patient is clinical stable Then discuss the status of the disease, prognosis and quality of life on regular basis (yearly or every 6 months) Revisit and Revise Recurrent hospitalizations Escalation of disease process JACC Heart Fail Stevenson LW. Advanced care planning: care to plan in advance

37 How to Initiate Advance Care Planning Barriers: Poor quality of communication about end-of-life care and prognosis Underlying provider related barriers: Lack of time to discuss end-of-life care Resource-intensive Health care providers beliefs and values Lack of knowledge/understanding of patient s values/religion/culture Lack of formal training in end-of-life discussions Lack of knowledge about prognosis Postgrad Med J Tyrer F. Factors that influence decisions about cardiopulmonary resuscitation: the views of doctors and medical students

38 How to Initiate Advance Care Planning Underlying patient related barriers 1. Lack of capacity 2. Lack of advance directives 3. Lack of family and friends 4. Lack of agreement by family members 5. Fluctuating preferences of patient/family

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40 How to Initiate Advance Care Planning How to discuss Prognosis Four steps: Preparation-Confirm if patient and family are ready Content- Present information using a range of time Patient s Response-Allow silence after giving information Close-Assess understanding of the information, elicit goals for end-of-life EPERC End of Life/Palliative Education Resource Center

41 Steps of advance Care Planning Step-1: Present information about prognosis in the setting of uncertainty Discussion of disease trajectory and prognosis Step-2: Engage the patient in a discussion around values and goals What are the values and goals (QOL vs quantity of life) Expectations from the medical treatment Discuss about fears around each decision Elicit meaning of quality of life JACC Heart Fail Stevenson LW. Advanced care planning: care to plan in advance

42 Steps of advance Care Planning Step-3: Review and recommend reasonable options for further care If your kidney function worsens further, we may want to consider whether or not you would want dialysis At some point we will discuss deactivating the shock function of your implantable cardioverter-defibrillator Discuss treatment options that may not be appropriate Discuss about what ifs JACC Heart Fail Stevenson LW. Advanced care planning: care to plan in advance

43 Figure 1. Ladder of Shared Decision MakingThe medical providers and the patient/family group both contribute and respond to information from each other. This is not a single event, but a process designed to reach decisions consistent both with the prognosis of... Lynne Warner Stevenson, Arden O Donnell Advanced Care Planning : Care to Plan in Advance JACC: Heart Failure, Volume 3, Issue 2, 2015,

44 Objectives 1. Defining End of life 2. Historical background 3. Ethical issues 4. Prognostication 5. Advance care Planning 6. Delivery of palliative care

45 Palliative care versus Hospice care Palliative care No limit of life-expectancy Coverage by all insurances Pain and symptom management Life-extending disease management Hospice Life-expectancy of < 6 months Medicare hospice benefit Forgo curative treatments

46 Palliative Care Domains and Recommendations from the National Consensus Panel Guidelines. Kelley AS, Morrison RS. N Engl J Med 2015;373:

47 Code status Adjust goals for disease management (HTN, HLD) Hospital Transfer Advance care planning Adjust rehab goals Medical work up Review Medications Artificial Nutrition Develop Feeding care plan (weights) Please do not reproduce without permission

48 Treatments and Medications at end-of-life Choosing Wisely (AMDA, AAHPM) 1. Don t routinely prescribe lipid-lowering medications in individuals with a limited life expectancy 2. Do not recommend feeding tubes in advanced dementia 3. Do not leave ICD activated 4. Don t recommend more than a single fraction of palliative radiation for an uncomplicated painful bone metastasis 5. Don t use topical lorazepam, diphenhydramine, haloperidol gel for nausea

49 Feeding Tubes 1. No improvement in functional status after Gtube placement 2. Variable impact on nutritional status 3. Mortality rate may be worse 4. Causes agitation in demented patients 5. Higher risk of pneumonia starvation in connection with withholding or withdrawing tube feeds should be explained clearly and sensitively Clin Ger Med Huang ZB. NUTRITION AND HYDRATION IN TERMINALLY ILL PATIENTS : An Update

50 Figure. Decision-making algorithm for PEG tube placement Linda Rabeneck, Laurence B McCullough, Nelda P Wray Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement null, Volume 349, Issue 9050, 1997,

51 Symptom Management At end-of-life million have dyspnea 2. 1 million have pain- 300,000 want more pain relief 700,000 may need more relief, but do not receive it Journal of Palliative Medicine Interventions to Manage Symptoms at the End of Life. Gunten FV.

52 Symptom Management Symptoms in patients who died from heart disease 1. Pain was the most commonly reported (50% of patients) 2. Dyspnea (43) 3. Low mood (59%) 4. Anxiety (45) Terminal phase of heart failure is comparable to cancer in respect to symptoms and distress Heart Gibbs JSR. Living with and dying from heart failure: the role of palliative care

53 1. Defining End of life Objectives 2. Historical background 3. Ethical issues 4. Advance care Planning 5. Prognostication 6. Delivery of palliative care 7. Hospice Consultation Program

54 Hospice Consultation Program Contract with hospice agency: 1. Utilization of hospice services increased from14% in 1999 to 33% in Lower rates of hospitalizations 3. Improved management of symptoms especially pain 4. Higher family satisfaction Palliative care consultation Consultation provided by external palliative care physician or nurse practitioner Consultation provided by internal palliative care teams or specialized units Kelley AS, Morrison RS. N Engl J Med 2015;373:

55 Multidisciplinary Approach Nurses Dietitian Identification of high Risk patients Advance Care Planning with multidisciplinary team, patient and family Doctors/NP Social worker, Activities Home Palliative care Implementation of goals of care NH Hospice Inpatient Please do not reproduce without permission

56 Next step Research about end-of-life in diverse patient populations (race, ethnicity, education, socioeconomic status, health, literacy, disease characteristics) Research studies about end-of-life in NH population

57 I have learned from my life in medicine that death is not always an enemy. Often it is good medical treatment. Often it achieves what medicine cannot achieve it stops suffering. Christiaan Barnard (Good Life, Good Death)